Major Areas of Study

Introduction

The research literature on family caregiving is vast and diverse. This section highlights some important areas of research on family caregiving, including studies of the prevalence of caregiving and the assistance provided by caregivers; studies of the psychological, social, health, and economic impact of caregiving; studies of individual differences in response to caregiving; studies of the effects of interventions or public policies on caregivers; and issues faced by caregivers for specific conditions or disabilities and populations.

Descriptions of the prevalence of caregiving and assistance provided by caregivers.

Studies of the psychological, social, health, and economic impact of caregiving.

Studies of individual differences in response to caregiving.

Studies of the effects of interventions and public policies on caregivers.

Studies of individual differences in response to caregiving stress often utilize stress process models and categorize factors predictive of caregiver outcome. These studies have been essential for the development of translational research on caregiver interventions. Examples of such studies are:

Currently underway is the first comparative effectiveness trial, using a pragmatic RCT design, of two caregiver intervention programs: REACH OUT and Mary Mittelman’s NYUCI. Study in progress, Sept. 1, 2013 to Aug. 31, 2016. View abstract.

As many once life-threatening diseases of childhood can now be managed as chronic conditions, the burdens of caregiving on parents have become more broadly delineated and understood. There is considerable research on the social, economic, and psychological impact of caring for an ill child on parents and siblings. A few evidence-based interventions for parents of ill children are also available (Askins et al., 2009; Stehl et al, 2009.)

The bulk of caregiver research to date has been conducted with older individuals living with conditions that are often associated with older age (e.g., Alzheimer’s Disease, stroke).

Although caregivers of varying ages and backgrounds may need to perform similar activities, cultural differences may influence the way caregivers perceive and respond to their responsibilities. These factors will become progressively more important as a result of increased diversity in United States—ethnic/racial, but also SES, linguistic, sexual orientation, and religious affiliation. Caregiver reactions, coping strategies, distress levels, acceptance of symptoms, and attitudes toward clinicians and outside help may vary considerably across different cultures (Culture & Caregiving, 1992). Research has demonstrated differing beliefs, levels of support, and physical and emotional outcomes among caregivers from diverse cultural backgrounds.